Re: Re: hashimoto encephalopathy - jan

July 26, 2004

hi jan,

i understand the list of symptoms are general as are most for any disease which is why ppl get mis diagnosed - the 1st neuro dx'd me with narcolepsy just from telling him the same list of symptoms - and they are the same - but he didn't listen to me well enough. i'm not as sold on the basal body temp either b/c i used this method when dealing with infertility - this tells you when you ovulate - so how can the difference be told there and the whole time i was charting and graphing it i had ssso many interferring factors such as sinus etc that altered it that it was hard to get a good pattern - so i wouldn't go by that either personally or make that the deciding factor - i would use it just the same as the other factors. i like to rely on lab results personally.

again i'm sorry if i was mean or critical b/c i'm not that way - i think the prednione is causing this among other tthings so i'm going to see if they will be willing to try the step 2 treatment - IVIG. anyway - i'm gettingg off subject and just wanted to say sorry if i read that wrong and responded inappropriatly.

visit our website

www.geocities.com/tanyarn96/countryside.html

www.poncetihomes.com

-- Re: Re: hashimoto encephalopathy - jan

I am not saying they are BS, - I am saying that contrary to say, a list of symptoms of adrenal fatigue or of hypothyroidism, the list of symptoms of HE cannot be used as a definite diagnostic tool, and just as a pre-screening to get neurological tests like you had, which will then prove actual HE. I am not saying nobody has it, I am saying some people like you actually have it - but that not everyone that has the symptoms on the list has it. Does that make sense? No need to apologize, I am not very clear either, so don't blame it all on yourself, it is probably me. LOLA person has the symptoms on the list, then they get neuro tests like you had, and if they come back positive like you did, they have HE. But a person can have a ton of the symptoms on the list too and not have HE, so the list of symptoms by itself is not definite - as your experience proves it. It was just a starting point for your doctors. Maybe one day they will know more and have more symptoms on that list that make it more definite, like the low basal temperature for hypothyroidism - pretty much every other symptom of hypothyroidism can be caused by another disease, only the low basal temperature and slow reflexes really indicate hypothyroidism. I read that there are less than 100 people diagnosed with HE in the US or some other low number like that (they said "a few dozen", which I understand could be over 100 but is definitely less than say 200, which would be "a few hundred"), so that is probably the reason they haven't come up with any definite list, there are too few people to really see a pattern at the moment.Jan wrote:> so jan, i'm confused - are you saying that b/c your brain has been > tested a lot and there isn't anything wrong with it you think that > HE symptoms are just BS? i just don't get what you mean - those > symptoms are indicators of many things - not just HT and HE -- would > you say they are not indicators of HT too? and cooulddn't we say that > ANY risk factor they put out there is just a way to justify tests - > maybe TSH levels are just a bogus way for dr's to keep us on thyroid > medication all our lives -- i know that sounds just a stupid doesn't > it. it sounds like you are saying b/c you have been tested and don't > have it then you think nobody has it and its all a bunch of BS -- or > am i just reading this wrong -- i admit - my brain is pretty messed up > right now b/c of HE so i may be reading this wrong so just clearify it > for me if so. i'm glad you don't have it - i'm happy for you b/c this > is no fun. i'm sure there are ppl with no illness that suffer some of > those symptoms from time to time - who hasn't walked in a room and > forgot what they went for - but would you agree that as a person with > HT you may have forgetfullness to some degree worse than the average > person - well i can tell you that from experience in the last 4-6 > months that with HE you can multiply the degree of forgetfullness by > 10 -- i would rate it right up there with beginning alzheimers since > i'm a RN and have worked with ppl with this. > > <<The brain is ok so there is no> > encephalopathy, so I am thinking that those symptoms are not definite> > indicators of HE, just risk factors that justify doing the brain > tests.>>> > > the reason i disagree with this is b/c you seem to base this on your > own experience - or lack of since you do not have HE (TG for you) andd > if you had researched it you would have read clearly that they state > the tests they run are EEG, MRI, CSF but that these can be either > normal or abnormal so they admit the tests are not definitive - the > symptoms to a degree along with the tests and the pt's experience is > what makes the case - just like the TSH levels - they can't be relied > upon - you have to go by the pt -- just b/c we fall into that range > doesn't mean anything - someone may feel fine with a TSH of 3 and > others will feel like they are dying and are more comfortable around > 1......being in the medical field i can tell you that they do not do > brain tests just for the fun of it -- they have found that some ppl > with HE have slowing of brain activity on the EEG and MRI's show > discoloration in areas and CSF show protein -- not in every case > though -- my dr did an EEG b/c of the monoclonal jerks that i was > having and with that abnormality along with my ability to give a good > H & P and give a time line with progressively worsening symptoms the > neuro, endo and myself agreed that was what was going on and they > didn't even ssuggest doing the MRI or spinal tap just for the heck of > it -- i'm sure there are some dr's out there who might but insurance > pretty much regulates doing useless testing these days.> i aapologize in advance if i took this the wrong way.>> > > visit our website> www.geocities.com/tanyarn96/countryside.html > <http://www.geocities.com/tanyarn96/countryside.html> > www.poncetihomes.com > <http://www.poncetihomes.com/> > > >> > >>> *

July 27, 2004

There is a difference between monitoring basal body temp for metabolic rate and for fertility. For fertility you are checking for a slight rise during a short period of time during the month. With, as you said, many factors making it difficult to pin point the time of ovulation.

When checking for metabolic rate you are checking for your average temp and comparing it against the normal average for humans. Once that is established you are monitoring for it's rise or drop over a period of time. Graphing it and watching it's change when monitoring physical reactions to adjustments in medication is actually a very clear picture.

I've monitored myself during thyroid adjustments and periodically just to verify that I am not fluctuating. Another way to be sure that my meds are consistent in potency is to verify the my basals are maintaining.

I've actually spotted slight rises that I suspect were the beginning of mild fever due to an illness... I increase my vitamin C for the next several days and then temp returns to normal... Have I fought off an illness before it established itself? I have no idea.. but I'm the one in the house that wasn't coming down with colds last year when the other two household members were.

I've been spot checking myself over the last month due to my funky leg. I can feel heat in the bad spot on the leg, suggesting my body fighting an infection of some kind.. but my morning temp (taken with a mercury thermometer, under my tongue) has shown no elevations, just sitting at a happy 98 to 98.2.f

Having said that, yes, you are right, you can't use body temp as your sole tool of measure. That is why you also monitor resting heart rate, and resting respiration. Between these three markers it is quite easy to see how your body is reacting to adjustments in medication and even how your body is increasing in strength and endurance.

No one laugh at me on this.. but there is something that I do to see how I'm doing as far as increasing my activity levels. I check my pulse rate every so often to see what it is after walking up the stairs from the basement. My theory is that as my muscles, lungs and heart become a bit stronger and I continue to heal that my heart rate should lessen over time during a given task and that my recovery rate from exertion should be shorter over time.

It's not something that changes from week to week. It's something that has changed over months.

I have gone from having to rest at the bottom of the stairs before I can walk the 15 feet to the washer to start my laundry and then just staying down there to take things out of the washer and carry them up stairs to hang all over the house to dry so that I wouldn't have to go down the stairs again. To someone that does:

Load of laundry and putting it in the dryer (that makes three trips up and down the stairs), wash dishes let them dry and put them away, take a shower where I actually can lather rinse and repeat AND put in conditioner!, go back and forth between two computers on opposite ends of the house to download and run virus and spyware scanners, cook the food and set up the mini meals for me for two days, then wash all those dishes and clean up the kitchen, comb out my hair and then plop my butt down to eat and do email.

All in an hour and a half.

Quite a change from the person that drug one load of laundry down the stairs, rested, put it in the washer, rested while it washed, then drug it up the stairs, rested, then hung items of clothing on doors and chairs and drapped over crutches, resting in between... then just sitting down to recouperate from the 4 hour marathon that I'd just survived.

So... I, personally, feel that self-monitoring to adjust meds is a valid method and have no doubts as to it's acuracy at all.

Topper () *self medicating, by symptoms and self-monitoring, since July '02*

On Tue, 27 Jul 2004 00:45:15 -0500 (Central Standard Time) "" writes:

hi jan,

i understand the list of symptoms are general as are most for any disease which is why ppl get mis diagnosed - the 1st neuro dx'd me with narcolepsy just from telling him the same list of symptoms - and they are the same - but he didn't listen to me well enough. i'm not as sold on the basal body temp either b/c i used this method when dealing with infertility - this tells you when you ovulate - so how can the difference be told there and the whole time i was charting and graphing it i had ssso many interferring factors such as sinus etc that altered it that it was hard to get a good pattern - so i wouldn't go by that either personally or make that the deciding factor - i would use it just the same as the other factors. i like to rely on lab results personally.

again i'm sorry if i was mean or critical b/c i'm not that way - i think the prednione is causing this among other tthings so i'm going to see if they will be willing to try the step 2 treatment - IVIG. anyway - i'm gettingg off subject and just wanted to say sorry if i read that wrong and responded inappropriatly.

visit our website

www.geocities.com/tanyarn96/countryside.html

www.poncetihomes.com

July 30, 2004

,

Someone with hypo would have lower temps when sick with an infection,

and higher with ovulating - the chart variations would look the same.

But the overall temperatures would always be lower than a regular

person's. If you really chart, for a couple months like people do for

ovulation, you can definitely see hypo. Of course, taking your temp 3

days in a row is gonna prove nothing.

I only know these numbers in centigrade, but a normal temp (armpit, not

mouth, mercury thermometer, 10m) for non ovulating days is around 36.5º.

On ovulating days it would be around 36.7º, and in the first 3 days of

your period, around 36.3º. This is what a non hypothyroid woman's temps

would be. A hypothyroid woman would be something like 35.8º normally,

36.1º ovulating, and 35.5º during the first 3 days of the period.

Heck, last year, some mornings my temperature didn't register in the

thermometer, as it starts at 35.0º and I was lower than that. That is a

much more definite sign of hypo than fatigue, for instance - fatigue

could be from anemia, or anything else. I don't put much stock in lab

results by themselves, I think a combo of symptoms like the BBT and

tests is the best approach.

You didn't sound mean or critical at all, no need to apologize. I guess

I probably did though, and I didn't mean to.

Jan

wrote:

> hi jan,

> i understand the list of symptoms are general as are most for any

> disease which is why ppl get mis diagnosed - the 1st neuro dx'd me

> with narcolepsy just from telling him the same list of symptoms - and

> they are the same - but he didn't listen to me well enough. i'm not as

> sold on the basal body temp either b/c i used this method when dealing

> with infertility - this tells you when you ovulate - so how can the

> difference be told there and the whole time i was charting and

> graphing it i had ssso many interferring factors such as sinus etc

> that altered it that it was hard to get a good pattern - so i

> wouldn't go by that either personally or make that the deciding factor

> - i would use it just the same as the other factors. i like to rely on

> lab results personally.

> again i'm sorry if i was mean or critical b/c i'm not that way - i

> think the prednione is causing this among other tthings so i'm going

> to see if they will be willing to try the step 2 treatment - IVIG.

> anyway - i'm gettingg off subject and just wanted to say sorry if i

> read that wrong and responded inappropriatly.

>

> visit our website

> www.geocities.com/tanyarn96/countryside.html

> <http://www.geocities.com/tanyarn96/countryside.html>

> www.poncetihomes.com

> <http://www.poncetihomes.com/>

>

> /-------Original Message-------/

>

> *

July 30, 2004